Hereditary Lymphedema: A Mystery Years in the Making

I’ve decided to do a post about my most recent diagnosis, Hereditary Lymphedema. Lymphedema around the world is most commonly caused by the disease, Filariasis a parasitic infection. However, my Lymphedema is not caused by Filariasis, but instead, it is caused by faulty genes. There are two types of Lymphedema: Primary (Hereditary) Lymphedema and Secondary Lymphedema. This means that you can either develop Lymphedema because of genetics or develop it from other means such as surgery or a disease. Secondary Lymphedema is a much more common condition to have. I want to inform you today about Lymphedema in general and how it has affected me.

I was predisposed genetically to have lymphedema, but was not born with it. There is a type of Lymphedema that activates at puberty and you don’t know you have it until it “turns on”. This was the first condition I got when I started to become chronically ill. Before the pain and the fatigue, I began to swell, specifically in my abdomen. This swelling was unlike any I had ever seen. I would start the day in a certain size of clothing and by the end of the day, I would have gone up several clothing sizes. My weight started to fluctuate between thirty pounds in a day, without me changing my diet or exercise. This is because of all the swelling.

Lymphedema shown in the back of my legs.

The reason people with Lymphedema become swollen is because of a disruption to the lymphatic system. Much like the cardiovascular system, the lymphatic system is connected head to toe. It carries a fluid called lymph, which holds your body’s immune system, filtering out viruses, germs, and waste products out of your blood stream. This system has no pump, like the heart, so it is moved around the body by contractions from your muscles. This fluid travels around the body in vessels and passes through certain stations called nodes. These nodes help to pass the fluid into another part of the body and are located in places like the armpits, neck, and groin.

The most common reason in the United States for someone to have Lymphedema is because of cancer removal surgery, specifically breast cancer. When cancer spreads to the lymph nodes, they are removed. With this important connection now removed from the lymphatic system, the lymph backs up into somewhere like the arm. For the rest of a person’s life, they will have to help that specific part of their body drain the fluid. The most common methods used are lymphatic massage therapy, lymphatic pumps, and vibration plates.

Lymphedema in my arm. See how it is puffy looking and hangs over?

With my Lymphedema, I experience a pressured filled stabbing pain that engulfs my entire body. It feels like I am about to burst. Since I have a rare version of Lymphedema, normal treatment is not as effective for me. My specialist doctor told me that I have fluid backed up everywhere in my body (even in my head!) and have developed clots in my lymphatic system that make draining the lymph even harder. I go to a lymphatic massage once a week, use a vibration plate as needed, and take a low dose of dextroamphetamine to help the fluid continue to flow.

It is important to me to advocate about Lymphedema because of the lack of research and doctors’ awareness about it. I have spoken to all of my doctors and they have reported that in all of their medical training, only five minutes in total was spent learning about the lymphatic system in general. This is horrendous. 10 million people in the United States suffer with Lymphedema, which is more than those who “suffer from Multiple Sclerosis, Muscular Dystrophy, ALS, Parkinson’s disease, and AIDS — combined” (Lymphatic). That fact alone is mind blowing! Where are the Lymphedema walks, challenges, and charities?

My rare Hereditary Lymphedema took eight years to diagnose and will be something that is always a life long struggle for me. I fight insurance to cover my much needed weekly massage therapy treatments. I just recently went six weeks without my therapy because of this issue. Know that there is no medicine to cure lymphedema. The longer that a person lives with Lymphedema, the more disabled that they become. With the gross unawareness surrounding Lymphedema, people are dying from infections and complications of the condition. Please share this story to help spread understanding of this devastating disease.

This was hard for me to put out personal pictures of myself during times where I did not feel so beautiful. I did it to show the significance of this condition. Also, to prove that no matter what you deal with, you are beautiful. I will not tolerate any mean comments on this blog, because this is a community in which we are surrounded in love and support. Thank you for reading this very important article today. Do you or anyone you know have Lymphedema? Would you like for me to go more in-depth on my personal journey with Lymphedema? Let me know. Please subscribe and have a beautiful day my Un-imaginables!

Thank you for shedding light on this disease. I was diagnosed about a year ago after battling a long eating disorder and having 4 leg surgeries. My lymphatic system has taken a blow. I now go to weekly massages. Glad to know there are others out there who share the same struggles.

I developed it in my early twenties. I am now seventy-two so I’ve had to deal with it for about fifty years. I remember my father having to bandage his legs every morning before going to work. My two brothers also had it, my younger brother often having to go into hospital when he developed cellulitis because of it. My sister fortunately has never had lymphoedema. My problem now is that I also have arthritis in both knees and signs of it in my hips. I live in the UK and the hospital have told me they will not give me knee replacements because of the risks involved with the lymphoedema. I have joined a group on Facebook called Lymph-what-oedema and every one is very supported of each other. Unfortunately my son has inherited the problem, so have two of my grandchildren and now it seems two of my great-grandchildren who are both eight years old are also already showing signs of swollen legs. As in the US, here in Britain many doctors know little or nothing about primary lymphoedema.

I am sending you and you’re family many hugs right now! It is so horrible that people suffer because the medical community does not know about it. Stories like yours and mine are why I will continue to advocate. I want better care and treatment for present and future generations. So that when they go to the doctor, lymphedema isn’t a mystery. Again, sending so much love to you all! 🤗❤🤗

I was recently diagnosed, too. Hereditary kind that has shown up in both legs. Struggling to find treatment options here in SC. I’m very grateful to know what it is and that massage really helps. Also dry brushing, compression and daily treatment with the flexi-touch. Finding my way and grateful for your post. Thank you!

Thank you so much! I think the lack of treatment options is so horrific, but one big reason why I will continue to advocate. I’m definitely going to post more in the future about lymphedema and am glad to have found another person who is going through the same thing as I! Hope you have a beautiful day 🤗

Hi there! I found you through The Lymphie Life blog. I’m a volunteer with the California Chapter of the Lymphatic Education & Research Network (LE&RN) & there is a ton of information on the website, lymphaticnetwork.org. Two of my favorite features are the video symposium series and “ask the experts”. And there is a fundraising 5k in Santa Monica, CA on Sunday, June 23. Reps from all the major compression & equipment manufacturers will be there as well as a SoCal lymphedema surgeon. And of course, there will be many members of the lymphedema community walking (or hanging out). You can find info about the walk on the website above. All the best! xo

I have this as well, its been 14years now, I fight the insurance too, thank you for posting this because I feel at time all alone with it, now I can see there are many out there and no help for it. Maybe one day they will have ( pill) lol to make it all go away, as my grandchildren tell me. God Bless, Joyce.

It is a struggle, especially in the Lymphedema community. However, it gives us all the more reason to stick together! I am so glad that my post helped to show you that you are not alone. I am going to post more about this in the future and so hopefully that will help too! Have a blessed day 🤗

For sure! I was also diagnosed about 2 years ago as well. It always surprises me to find another person who has lymphedema. In reality though, it’s so common, but no one knows about it. I hope you are having a low symptom day! 🤗